So much for a more positive year!

For some reason my body does not like the internal stitches they use. A little over 3 weeks ago the docs went in and removed the 8 or so wires that were wrapped around my sternum from my heart surgery. Only one of the wires was causing issues, but they were going to be "revising" my scar (chopping out all the extra tissue from where it kept getting wider), so we figured they might as well just get them all out.

On Friday the bottom of my scar was looking infected. It was red, swollen, and quite hard. I went into the clinic, and they could see a stitch right under the surface of the skin, so figured that's what was causing it, and decided to open the incision enough to remove that stitch and find the knot at the end and remove that too. They did so, and it all looked better the next day, but for some reason I was in excruciating pain, in a band across my chest just under my breasts.

I ended up going to ER where after a bunch of tests, one of the surgeons who removed my wires was called in - he was the guy on call for the weekend luckily, He knew the situation and my history, so poked around in the incision that was made the day before, and saw a bit of fluid, poked a bit harder there, and the cotton tip he was using disappeared a good cm or two under my skin which fluid came out of - a pocket of infection.

I was sure this was the culprit, so was pleased when he opened my incision a bit further using local anesthetic this time (*#^& those lidocaine injections hurt). That night was ok, but the pain started coming back. I had vicodin and a sleeping pill before bed (which would generally knock me out for at least 8 hours), but I woke 2 hours later in possibly the worst pain of my life - worse than anything post-heart surgery. It hurt to breathe, and it hurt to make any sort of movement. I have a fairly high tolerance for pain, but this was the sort of pain that took my breath away, made me nauseous and had me crying.

So back to Stanford we went, where they decided to run some more tests, then admit me. They gave me IV Delaudid which is supposed to be 8 times stronger than morphine, and it didn't do a thing for the pain. (Apparently it's also supposed to be 3 times stronger than heroin on a per mg basis...)

All tests have still been clear still, so they've had me on IV antibiotics which will hopefully sort out any hiding pockets of infection, and regular IV pain medication. They've been giving Zofran for nausea as well as the pain meds as I don't tolerate the drugs very well, and have only had 1 bout of vomiting (6 1/2 hours after the last pain meds!).

I declined pain meds after that 1pm dosage as my pain levels were finally dropping, and I was starting to move around a bit, and I wanted to know if it was due to the pain meds, or if the pain was actually going away. I went to bed around 9pm, and woke up every 2 hours (sleeping in a hospital is not easy), but I still managed to get a good amount of sleep, so that's fine. I was woken at 2am or so to get more IV antibiotics and I was in pain then, so got more pain meds. The pain wasn't as bad as the day before, and it stayed pretty much under control after that.

Given that this has happened twice now, my cardiologist, who popped in on Sunday to say hi (very nice of him, since he has weekends off!), thinks I might have some sort of allergy to the Vicryl stitches they use. They are supposed to be absorbed by the body, but I have another stitch coming out at the top of my scar (possibly another knot). It's poking through the skin, and it's not red or sore, so hopefully it will come out problem free.

So on Monday, they got test results back and confirmed it was staph. Again.

They wanted to do aggressive treatment of it given the graft in my aorta so they inserted a PICC line. It's intravenous access, but it can stay in for weeks so they can do IV fluid without me actually staying in hospital. They're assured me it's just like inserting an IV, but they feed a long tube up to a bigger vein. I was feeling quite faint just thinking of it. The bad thing about having a laptop at the hospital is when they say what they plan to do, you can Google it and flip out.

And for someone who doesn't like needles, looking at this IV thing that goes in the inside part of your upper arm (see any veins there?) and a 50cm long tube that connects to it is enough to make a sleep deprived person throw a hissy fit.

My main freak out was on Tuesday morning. I had almost no sleep thanks to the lady in the bed next to me whose oxygen levels kept dropping which meant her alarms kept going every couple of minutes (BEEP BEEP BEEP!), and it sounded like it was coming from my alarm, so it kept me awake and worrying.

I was waiting for someone to come and do an echo to make sure this infection wasn't ripping my heart valves apart (lovely thought), and waiting for someone to come and insert this scary long tube into a vein that I was sure would be impossible to find. I had no idea when either was happening, so was losing it. For those who think I'm being brave, trust me, I am not and was not.

Andrew thankfully left work to come spend the rest of the day with me and keep me calm. He went to speak to my cardiologist about all this. As a side note, this is what I like about the cardiac team and being in the hospital where they are. Andrew just goes to their clinic area, walks past reception, goes to find the coordinator who most probably gave him a big hug when she saw him, he asks questions about the PICC line, and she immediately calls the doc's mobile phone who comes straight in to see him (he was looking at my echo at the time that had been done not long before, so could also assure Andrew everything was fine).

My doc said that the risk of infection to my heart was increased due to the nature of the infection, and having an aortic graft, but unlikely, but there is no way anybody wants to risk it, so yes I should get a PICC line, it will be done at my bedside, under local anesthetic, and I will be fine.

I was still worried, but at least by this stage I could nap on and off with Andrew watching over me.

So the echo on my heart was clear (WHEW!), and the nurse came in the afternoon to do the PICC line. She is a PICC nurse - that's all she (and a team of others) do because it's so common in hospitals as it causes less trauma in the long run.

She was also so lovely, and she had a girl there who was interviewing for a nursing job who was just coming to watch. So my nurse was explaining everything to the interviewing nurse which was good - I like to know what's going on.

The lidocaine injection was about as hurty as I expected (I hate those), then it was fine from there on in. The nurse makes it a sterile environment, finds a good vein using ultrasound, then somehow feeds an IV into the vein in my arm (I couldn't see and didn't want to), and then places this cool thing on my chest which tracks the path of the wire inside my chest. It was pretty amazing to watch the screen and just see this little wire snaking through. Once the wire dropped down, she knew it had passed through the vein, and reached the larger superior vena cava. She then uses a "wing" lock, and stitches that to my arm to keep the tubing in place, places another lock a bit further up the tubing so if anything tugs on the tubing, it tugs on that lock rather than the tube coming out of my arm, does some more anti-tug and anti-infection measures, and covers it all up. There is also 2 ports attached to it that I can use. One of them is a bit bigger, so if they want to take blood, they can do it from there rather than poking me.

Once I had that done, I was pretty much able to leave hospital as I could then receive my IV antibiotics from home through my line. So the next day (Wednesday) I finally got released - I just had to wait for a home nurse to be available to bring me all my supplies and show me what to do, and they had to keep giving me antibiotics in the mean time.

The home nurse came, and we were quite impressed with the set up. I have a 2 week supply of IV antibiotics (sitting in the fridge between the OJ and the tortilla wraps), and a heap of saline and heparin solutions in plungers, alcohol wipes, IV tubing, and other exciting bits and pieces. Each bag of fluids is a 24 hour supply and delivers 100ml doses of antibiotics every 4 hours, and it takes 1 hour to deliver the fluid. So there's 3 hours break in between, and in that time it delivers small amounts of the same solution just to keep the line clear and flowing. So I wear this constantly, and don't need to worry about constant care throughout the day, or accidentally missing a dose which is nice. I do have to carry it everywhere for 2 weeks though. Also included is a computerised pump which controls the dosages and pumps the fluid through, so the bag doesn't need to be kept above the level of my arm.

They gave me a bag for the fluids and pump that I could throw over my shoulder and carry everywhere but by last night my back was aching - it's not the most ergonomic design. I had a think about it, and discovered the Camelbak that I used in my triathlon days would be a good size to hold it all though. So the pump and fluids are now in that, and it is easier to carry around and puts less pressure on my back.

You have to be very careful because everything comes in sterile packets, and you have to make sure everything is super clean, as the line goes straight to your central bloodstream, and you REALLY don't want to introduce germs/bacteria from touching or even breathing on anything that can be transported through the tube. It's all gone fairly smoothly apart from one small incident today when I forgot to unclamp the tube (the instructions say to clamp the tube, but don't say to unclamp it, so if you just follow the instructions, it's easy to forget), so when the time came to pump the antibiotics in me, pressure built up and exploded the filter that the antibiotics go through. No big deal, it just meant changing the line again. The whole process could definitely be more idiot proof.

So that's where things are at. I still have a hole in my chest from where they drained where they thought the infection was, so those dressings need to be changed 3 times a day (something I can do myself), the IV fluids need changing once a day (can do myself now), and showering is just a bit challenging as my left arm is covered in a plastic cover, since the PICC area can't get wet, so I have just the one arm. I also have my Camelbak sitting on the loo, next to the shower so I can shower without disconnecting everything (the tubing can get wet, just not the insertion site). All this makes showering a slightly more challenging process, which Andrew is still helping me with (washing my hair with one hand, and a line between my arm and the toilet is the most challenging thing so far).

Otherwise I'm feeling fine. I was feeling exhausted at the end of last week, but feel a bit better now. I can't lift things or move my left arm too much or the insertion site of the PICC line hurts. I'm doing a Certified Nursing Assistant course at the moment in the evenings, and we just started clinicals, which are just too hard right now, so I'm going to see if I can do the Fast Track course which they are just starting next month - it's more hours each day, but it's during the day time which is more practical for us, it will give me time to heal, and it will only finish a couple of weeks after the current course. I also have an exam on Wednesday, and I'm well behind on my study, but I should do ok still.

Oh and I should add (I copied most of this from Facebook, and know a little more now), that they think at least some of my pain may be caused by gallstones. Where the majority of the pain was is more like gallbladder pain, and I have a heap of gallstones apparently. They did an ultrasound while I was there which confirmed the gallstones, but didn't show any of the usual signs of the sort of gallbladder problems that require immediate surgery. It may be coincidence that I got them at the same time, or maybe stress from the incision brought on the gallbladder pain? Either way I need to get all my scans and get it checked out by someone who isn't a cardiologist!

Andrew's been wonderful once again - if it wasn't for him I probably would have demanded to be checked out of hospital without getting any of this done, and ended up in much worse shape. Poor thing may end up with a drinking problem by the end of this though - neither of us can take much more! The fact that he helps with dressing changes, IV bag changes, and watches people cut into me so he can hold my hand is really quite amazing.

Happy 2009!

This time a year ago I was in ICU, regaining consciousness, and they were getting ready to remove my breathing tube.

I had an awesome initial recovery, but since then have had multiple (minor) problems - atrial fibrillation, staph infection in the incision that came back and needed to be reopened to drain (eww), scar continually getting wider, keloid scar, PVCs (fluttering heart beat), and now a wire causing me grief, not to mention the regular worry that something else might go wrong.

But I'd do it all again knowing that at least that it is fixed, and anything that may ever go wrong isn't likely to be life-threatening, and knowing that unlike my dad and aunt who had the same condition, I will reach my 30th birthday.

It feels like forever ago now that I had surgery!

Otherwise, everything else is going great. I passed everything in my last semester at uni which gets me past first year, and am already only a month away from final exams for my summer semester subject.

I have always been interested in being a nurse, but for various reasons have never actually done much about it (started a degree, but it wasn't the right time, and I didn't continue with it). I have done some life reevaluation, and decided that nursing is where I feel like I need to be.

So on Monday I am starting a 3 month Certified Nurse Assistant course in the evenings at a local community college, to become a qualified CNA. This will allow me to change dressings, change bed pans, help with rehab and other less-glamorous tasks. But the upside is that I can get work in one of the big hospitals (preferably Stanford) and get an idea of what life in the health industry is like. If I enjoy it, then I will continue to finish my Bachelor of Business, then when we get back to Australia, I can do a 2 year post-grad Bachelor of Nursing or Masters of Nursing, to become a qualified RN. I'm quite excited about this career change, and hope it works out - if not, I always have business as a good back up!

I'm looking forward to a successful, positive year - better than the last couple anyway!

"Fixing" my scar

I say "fixing" because it's currently dark purple. The laser breaks down the blood vessels, so it's pretty much like a big bruise at the moment, and looks a little scary. I won't post a photo on the blog, I'll spare those who don't want to see this time. Pic is here - http://photos.andrew.net.au/albums/scar/scar_001.sized.jpg

Once the bruising goes away it should look pretty good - fingers crossed!

So we got to Stanford at 6:30am. This time we went to the Stanford Ambulatory Surgery Centre - it's mostly day surgery I believe. It was a really fancy place, nice wood panelling, fancy and comfortable waiting area, and 2 screens which had a heap of numbers that were associated with patients, and colour coding. So it starts with Registration Complete, then went through to Pre-op, then a range of others including surgery, stage 1 recovery, stage 2 recovery, transferred etc. (there was about 12 different codes) so you could keep an eye on where your person is up to.

Anyway, so they do the IV under a super fine needle local anesthetic, which is always my biggest worry, so that makes it nice and easy. I had to wait in the OR for about 15 minutes all ready to go because they were early and the laser wasn't quite warmed up yet, but they started pretty much on time at 8:30am, then before I knew it I was waking up at about 9:15am.

Then it was recovery, and all the check out stuff, and we were home by 11:30am, and I was feeling fine. I slept for an hour, and woke up feeling pretty good, just a bit jelly-legged.

So fingers crossed it will stop getting bigger now!

Scarred for life!

Well, that was kind of expected after getting open heart surgery. Unfortunately I don't heal very well when it comes to scars. My c section scar is still quite thick and raised, whereas my friend Briana, who had a c section a few months before me, has an almost invisible scar.

So my heart surgery scar got worse after I got the staph infection - it separated as fluid built up under it, and then after the incision got opened again to drain the infection, it never quite went back to normal, and has gotten wider, thicker, and more tender over the months. It's still getting worse, so on Monday I'm going back to Stanford to get "plastic surgery". They're going to laser the scar itself to help with the appearance, and do steroid injections which will hopefully shrink some of the excess scar tissue, or at least stop it from getting any bigger, and will hopefully also help with the itchiness and some of the tenderness. It's a general anesthetic, but I'll be surprised if it takes more than half an hour.

This is how it looks now:




You can see the bottom part near my fingers looks great - that's how it should all look! It's gotten lighter over time, but wider.

This is compared to in June:



I'll put up another photo after everything is healed from whatever they do on Monday.

Study study study

Since we got back from the holiday I've just been madly busy with study. I had assignments, online exams, catching up with missed study, and preparing for end of semester exams. I've been doing 3 subjects this semester, which has been quite full on to do externally, and just before we went on holiday I had a couple of weeks where I kept getting "ocular migraines" on an almost daily basis. My vision would go all weird, and I wouldn't be able to see clearly, I got really dizzy, felt nauseous, then the headache would come on. The whole process would last a couple of hours and was very disrupting, so I got behind with my study. I think I was just sitting badly, and muscles got too tight in the wrong spots. It's certainly gotten better since.

The final end of semester exams were over the last week, so I'm really glad to have them out of the way. I'm finished first year now, which is good. I'm doing just one subject over the "summer semester" so that should give me a bit of a break - new semester starts on Monday.

Catching up (yes I'm still alive)

It's been a really busy few months! I'll go back to September.

We went on holiday to the Seychelles and Dubai for 2 weeks in September which was fabulous. My aunt Vicki lives there with her husband Chris and their two boys, Jack and Harry. Chris has a job as part of the United Nations, which is based in the Seychelles and they've been living there about 4 years now.

The Seychelles was fascinating. The economy is completely broken - they have the highest level of debt of any other country, and since we were there the International Monetary Fund has agreed on a $26 million rescue package, and the currency has floated and been devalued. A lot of things were run down, the roads were terrible, there's a big divide between the rich and poor and everything has to be imported, so the black market is rife.

But the beaches were gorgeous, the weather was fabulous, the sky was oh so clear at night, and the stars were stunning. Sitting out on Vicki and Chris' deck every evening watching the night sky was an amazing way to relax. We were a very short walk from the beach, and just enjoyed our 10 days there relaxing.

It was great to spend quality time with Vicki, Chris and the boys. Vicki lived with us for a few years when I was younger, so I've always felt very close to her, and Jack and Harry are such great kids, we had a lot of fun with them.

Here's a few pics from the trip:

The markets



Amazingly clear water



Full moon over the fishing boats that were at port due to the worries over the Somalian pirates



We hiked to a beach called Anse Major, which was quiet, and so pretty



On our way to Anse Major




View from Vicki and Chris' balcony



Everyone. Vicki doesn't usually look so grim, and no, Andrew didn't bother with shaving while away :)



A couple of gorgeous sunrises







After Seychelles we spent a few days in Dubai on the way home since we were flying with Emirates (best airline I've ever flown with by a long shot), and stopping in Dubai anyway.

It was Ramadan, so we couldn't eat or drink in public during daylight hours, and a number of places were either closed for the month, or closed for a few hours in the afternoon, but it wasn't a big deal. We had a really nice hotel which we got a great deal on due it being Ramadan, and therefore the low season, the city in general wasn't too busy, and we just did a double decker open top tour bus tour the 2 days we were there, which supplied us with complimentary cold bottles of water which we guzzled as soon as we got on the bus - so we probably drank more water than we would have otherwise.

It was stinking hot - over 40 c, and about 90% humidity, and the heat was disgustingly oppressive. We had a fabulous time though. It was such an interesting place, and there was so much to see and do. And being so hot, it made us very aware that we were in a desert, and the regular calls to prayer from the temples made the whole experience more authentic. It's a place I would like to go back to some time to further explore - 2 and a bit days definitely wasn't enough!

Some pics:

Down on the water - there were boats coming and going loading up with goods to be transported to other nearby countries, carrying tourists around, and general water taxis for transport.




A small selection of gold in one of the windows at the Gold Souk (market)



A shopping centre called Wafi - it had designer shops, and an upmarket "traditional" souk area - the place was deserted due to Ramadan, and most of the shops weren't opening the entire month.



One of the water taxis



Dubai is a construction zone! There were cranes everywhere you looked. The sky was never clear, it's pretty much one big sand storm. And this highway made American highways look tame!



The new Metro system they are building which will make a huge difference to traffic - you can see Burj Dubai in the background which will be the world's tallest building



In front of Burj Al Arab, Jumeirah - the water there was toasty warm!



And then Ski Dubai... so bizarre!



One of the big mosques



One of the mosques near us. They were having the evening iftar buffet (breaking of the daily fast)



And Andrew on Dubai Creek at sunset



The rest of the photos are here

Dealing with other people's pregnancies

This is something I've been asked about a few times, and something I was just thinking about, so thought I'd share. In the months after Joshua's death, some people were hesitant to tell us they were pregnant in case they upset us, some tell us before anyone else because they want to tell us in person rather than on the grapevine. That really didn't bother me, I'm generally excited to hear about friends pregnancies. Ultrasounds were hard to look at, and baby showers were hard to go to, and still are. Joshua died 2 days after our baby shower, so baby showers just don't have that same level of fun anymore, memories of our loss just come flooding back.

The other thing that's hard to deal with is other people's loss, but for a slightly different reason - my heart just aches for them. A very close friend had an early miscarriage a few months ago, and my heart ached for her. Another good friend who has also had a rough year has just suffered a 2nd trimester loss, and it breaks my heart. I don't want anyone to ever feel the weight of loss like we did. I know a loss earlier in the pregnancy is probably a bit easier to deal with, but it's never easy, and once you start planning names, planning how the room will look, what you'll need, changes you'll need to make, and start thinking about the future they're going to have, it's so hard to have it all ripped away.

It's something that really affects you for a long time, and I think it's important for people to understand that.